Trying to find myself

[mike8629]

I was diagnosed in July 2015 and have spent a total of 22 days on meds.  (Copaxone-which I had terrible injection site reactions to.)  Struggling with Neurologist and even have changed after the new year and much happier now.  Still now meds fighting insurance company.  But I have weird feelings that come and go frequently.  Seems like restless leg feeling when sitting where I cant stand not to move my legs and feet constantly, can not stand too long with out holding onto something for fear falling which have occurred twice in the last week, sore back and side and headache for a couple of days now.  Just feel alone and like I ask dumb questions at the doctor and no one understands in my house, what is going on in my body.   Where should I go for information to understand what is going on, form my family and what I can do to help myself with the issues as I try to get on meds?

[TLC1104]

Hi,
I was just diagnosed Oct 2015.
I can too relate to a lot of what you have said especially the emotional side & the thought that no one is 'getting it'
I find myself saying to myself (not to say it aloud to anyone, haha) external you see but internal you are alone with. But this is where I've found the forum a good place because even just reading comments from others makes me feel less alone on a bad day.
I'm so glad I took my doctor's advice and found this.
The people on here are amazing! The information & more importantly the support you get from here is lovely.
The next thing for me now is to find a group local to me to meet people too.

As Alex pointed out about the first years, the rollercoaster is in full swing!
It's all about finding ways of adjusting to & learning to live with the 'new normal' for us now.

I do hope your insurance gets sorted soon.
Take care.
T

[HVAC]

It is hard the first year after diagnosis. Really the first two years. It is like being dropped on another planet. Most of us are not experts on MS. We have to figure out when new things start if it is MS or something else.

Our loved ones do not understand MS. No one who does not have a disease knows what another person is going through. We call the first year the roller coaster. Your emotions are all over the place.

It can feel very isolated. I got a therapist. One who dealt with chronic illness. I also went to on medication for anxiety and depression. Now I go to a life coach who does writing to heal.

I change my perspective through writing about things. I also have terminal cancer. I was really angry about the MS and then the terminal cancer. Now I am actually happy about my life. It is weird.

Now that I am happier my husband is happier. I was making him miserable with out realizing it.

Be kind to yourself. MS is a really tough thing. There is so much uncertainty. The truth is life is uncertain. We do not know what will happen next. Control is only an illusion. We can control our thoughts, words, and actions. Everything else is just going to happen. WE have a disease that controls us.

Alex

[cjtmn]

Hi mike8629,

I think that Immisceo's suggestions are the best for getting some support and help. Is there a NMSS Chapter close by with a group meeting? It would be good to meet some people who are dealing with this thing so you don't feel so alone.

I wan't to let you know that I can relate to much of what you are going through on the emotional side. I was just Dx'd in November, and have been waiting to start Plegridy. I, too, feel like friends & family just don't get it and feel ridiculous for always having to explain myself and why I may not feel very well.

I hope you can find some support close by. This message board is wonderful as well if you are looking to hear other people's experiences.

Wishing you all the best,
Cheryl

[immisceo]

I'd start with your local MS Society chapter. It would likely be this one.

21311 Civic Center Drive
Southfield, MI 48076

Toll Free: 1-800-344-4867

Phone: [phone]

Fax: [phone]

Also, is it possible that your insurance will cover symptomatic prescriptions while you wait for it to sort out your disease-modifying medication? Gabapentin is taken by many members of this community for symptoms similar to what you describe with your leg.